Time in the life of a cholangiocarcinoma patient is measured by CT scans. CT scans are every 9 weeks during first line chemotherapy. Three rounds of chemo (2 weeks on, 1 off) between those scans. I assigned grades to the scan results. An "A" scan would show shrinkage. "B" is stable. "A" is awesome, "B" is not better, not worse. Every 9 weeks you get to drink contrast to either celebrate improvement, continued stability, or the end of your current treatment. 

My scans moved from A's to B's in the fall of last year. Chemotherapy and radiation reduced the size of my tumor by 4 cm. In February the tumor in my liver remained stable. Sadly, the potential spots that had been showing on my peritoneum (lining of the abdominal cavity) since the beginning of this all showed growth. Progression. The end of first line treatment.

The progression is local and my lymph nodes are still clear. Progression to the peritoneum is common. It can lead to ascites (fluid) but none is showing on the CT. The things I remind myself at this latest setback. The continued knowledge that the setbacks from here only get more serious. 

So I moved to the second line treatment. The chemo door closed for now. Enter Tibsovo - an IDH1 targeted therapy.

Targeted therapies are the new players in the field of cancer treatments. Most cancer tumors have genetic mutations and drugs have been developed to target those mutations. My tumor has the IDH1 genetic mutation which has an FDA approved treatment. Tibsovo is a daily pill. No more Friday's spent at the infusion center. 

A small to-do list before starting Tibsovo. Insurance approval and a baseline EKG. 

There are two significant side effects of Tibsovo; 1) Guillain-Barre syndrome and 2) QTc prolongation which is an increase in the electrical activity in your heart that can lead to irregular heartbeats and be life threatening. Patients have a baseline EKG and then another two weeks after starting. Monitoring of QTc prolongation continues after that with an increasing number of weeks between EKG's.

I started taking the Tibsovo in mid-February. Two weeks since my last chemo infusion.

December and January were pretty tough months for me. I was anemic with severe fatigue. Chemo brain fog not fully clearing before the next infusion. Little to no activity. Housework and cooking took serious hits. I was keeping one nostril above the water line. Before the CT results came in, my oncologist and I were planning a chemo break. Allow time for my body recover and restart chemo last week of February (a cycle break) or early March. Now, rather than no treatment I was moving to a different treatment.

As time has passed since my last chemo, my energy levels returned. My house is cleaner. My never ending paperwork pile has reduced significantly. I've started to feel more in control of my life. I'm getting out more and doing more things. I was feeling physically better as I boarded the roller coaster... 

Two weeks and you get an EKG.

My results were not good. My QTc increased significantly and I was above the threshold. Fuck. There is no standard third line treatment. Likely a return to some form of chemotherapy - the medical leash. A medical leash is not part of the planned summer of fun with my kids that includes lots of travel.

Stop taking Tibsovo for a week and get another EKG. Number must fall below a certain threshold in order to re-start at half dosage. Yes. This is my favorite outcome. I hate all others.

A week and a better EKG. My QTc is mere points below the threshold. Yay! Start half dose and check in again in a week.

A week and an uh-oh EKG. My QTc rose ever so slightly but still below the threshold. Keep taking and another EKG in a week. My QTc cannot rise any further or I have to stop Tibsovo. I cannot emphasize enough how much I do not want to stop taking Tibsovo. Did I mention the SUMMER OF FUN??? Tibsovo works with summer of fun. Chemotherapy is not.

A week and a shockingly good EKG. My QTc dropped and is close to my baseline value. YAY!!!! I get to keep taking Tibsovo. Next EKG in 3 weeks. My goal is to have my QTc be even lower. Not sure how to do that but (determined face) I'm doing it! Say it with me - SUMMER OF FUN!!!

The past two months have been a roller coaster. I don't like roller coasters. 

I mentally exhausted.

Yesterday was a really good day. 

Next EKG is 4/19. I'll also be getting a CT that day. Fingers, toes, ankles, and wrists crossed that it will be a really good day too.

Julia